Thursday, September 29, 2011

This wishing stuff is so incredibly fun and exciting!! Cicily's three wish granters Liz, Czerina, and Michael came to meet her and the family last week. They came with gifts for Cicily, Maya and Sophie, balloons, pizza, and an air of excitement! I was so impressed at how they focused on Cicily, but also included her whole family. What a fun night we had! Cicily was insistent on her wish granters seeing her chickens and her bedroom and they kindly obliged. They also played with her and asked her questions about what things she likes: Dora, polka dots, Taylor Swift, animals, Minnie Mouse, etc. Then Cicily showed them her wish book, the lovely coloring book from Make-A-Wish about what she would like to wish for.

It was pretty apparent to them by the end of the night that Cicily's one true wish is:

To go to Small World at Disney World!

When they asked her about Small World her face lit up and she did a whole body "yeah" where every limb gets excited and flails. So, her wish granters told us they just have to run all the paper work and get the ok from Cis' doctor and then they'll plan a trip to Orlando for our whole family! We are beyond excited! They told us about this AMAZING village we would get to stay at called Give Kids the World: http://www.gktw.org/ You must check it out, it's beyond belief fun for wish kids and families. ﻿After the wish granters left we looked up Give Kids the World online and enjoyed looking at pictures and seeing all the awesome activities they offer. Maya was giddy and asked how much we'd have to pay for all of this. When I told her we wouldn't have to pay anything because wonderfully kind people donate their money so families can do this, she was in awe. She said, "I can't believe so many people would do that for us." I'm in awe too Maya.

Later we realized we'd also be able to go to the Wizarding World of Harry Potter at Universal Orlando. Now for the last week, multiple times a day, Maya will yell, "Harry Potter Theme Park!!!" and every single time Cicily "yells" back - she laughs, smiles, flails, and flops backwards. We had to get it on video, it's so cute and gets us all excited! I decided Cicily is mainly excited about the Harry Potter theme park because she knows it makes Maya happy. It's not like most 4 year olds that are just liking what their big sister likes; Cicily is genuinely happy to make her sister happy.

What a lovely thing for our family to be able to focus on and daydream about! Thank you Liz, Michael, and Czerina and Make-A-Wish!!!

Tuesday, September 6, 2011

Things keep popping into my head lately that I've learned from being Cicily's Mom. So, I've decided to start a regular posting topic of "Being Cicily's Mom has taught me..."

I already mentioned in the last post that Cicily wanted to paint her doll's toenails. It was a little too dangerous for me at first. Defacing a doll permanently by painting her toes. Dolls toes shouldn't be painted, they're dolls, you take care of them. You don't write on walls, you don't color a doll's face, you don't paint her toes. So after all that went through my head in a quick second, I realized - who cares? It's Cicily's doll. She'd like her toes to be painted just like hers are painted. It's not going to hurt anyone. So we painted those dolls cute toes. Cicily was so proud!
Then Maya came in the bathroom and Cicily showed her the doll's toes. Maya's face registered all of my first thoughts (she's a practical, planner - kinda gal like her Mom). Maya looked semi-horrified. But then her face softened and she said, "oh, you're going to take the paint off though huh." I said, "no, we're going to leave it, isn't it cute." I explained my rational to Maya and eventually she was mostly ok with it too.
It's a good lesson for a practical girl like me to learn. I try to remember it doesn't hurt anyone to have a doll's toenails painted. It doesn't hurt anyone to use up a sheet of new stickers all in one day. It doesn't hurt a kid when they get dirty playing outside.

Cicily's dirty painted toes.
Maya took this lovely picture of Cicily's dirty feet after Cicily got to screen for artifacts on a recent archaeology dig.

Thanks to you Cis, your younger siblings will have a much more dirty, destructive, playful childhood, I think they'll thank you. :)

The title's a bit dramatic, but given the situation, I feel a little more dramatic than usual. I wanted to write this post because I know people are curious about what it's like - to know your daughter will die young. I thank those close friends who have already asked me what it's like, and especially thank those that can share their own stories with me.I will try my best to put it into words - the feelings, the thoughts, the actions, the changes.
My mind keeps coming back to the country song, "Live like you were dying". Knowing Cicily won't have a full, long life has, without us even realizing it, inspired us to fill her life up as much as we can with the things she loves. We haven't gone skydiving or ridden a bull named fu man chu (for those Tim McGraw fans out there). But I have, if possible, loved deeper. And done some other things too, like:
- Just after we found out (for sure) in December, I wanted to spend every minute I had playing with Cicily and making her laugh. I stopped talking to friends, stopped taking her to doctors, cancelled therapies, and started focussing on the most important things. It didn't take too long though to realize there's a reason we have friends (thanks friends for still being friendly), and that sadly those annoying insurance companies still need to be dealt with.
- In October (back when we knew her condition, but it was unconfirmed) when I took her to get her 4 year old portraits taken, I bought the big one. If it were her last portrait, I would want a big one. Now her 5 year old pictures are coming up. How many years do I buy the big one?
- In November we started to look into chickens. We should have waited until we had a back yard that should actually accomodate farm animals. But, would we have the time to wait to give Cicily her own farm? We knew she'd LOVE them, and everyday when she asks to see her chickens I'm glad we didn't wait.
- A few weeks ago I was painting Cicily's toenails and then she wanted me to paint mine. Then she picked up a doll by us and pointed to the dolls toes. She wanted to paint the doll's toes. At first I thought, dolls toes shouldn't be painted- that would deface the doll! Then I realized, what's the big deal, life is short, if Cis wants her dolls toes painted - who cares! So now we have a doll with cute red toenails.
I wish I could say knowing my daughter will die young has made me a perfect person - that I always spend time with the most important people first, that I always remember to be patient and act kindly. That I do spontaneous, fun things everyday just because you never know what will happen tomorrow. I wish I could even say that everyday I spent more time with Cicily or never lost my paitence with her. It's not exactly like all of that. Knowing Cis will die young hasn't made me perfect, but it has made me a better person I hope. And, no, I'm still not going skydiving!

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Cicily at 8 years old

About Cicily

Cicily has degenerative hypomyelination (leukodystrophy) - no white matter coating her brain, which is terminal. For Cicily, this means she has limited motor control and "shakey" movements. It does not affect Cicily's cognitive abilities, as she communicates and learns at a standard level for her age.

Cicily also has Treacher Collins Syndrome. For Cicily this basically means she was born with a cleft palate, small lower jaw, small ears, and no ear canals.

Cis is such a tough girl though, and she's so easy going. She handles all of her difficulties so well. She's certainly up for her challenges! She continues to be a medical mystery and a joyful girl.